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1.21.2010

Jess

I haven't know what to write in this post and have been busy with Uni work so unable to give it the proper time and thought it deserved. Jessica Wales was 20 years old, had Cystic Fibrosis and like me waiting for a double lung transplant to save her life. You can read her story here on the website of the transplant charity we both worked for. Jess had been waiting for nearly 4 and a half years for transplant, a shocking amount of time to have waited and an incredible amount of time to have managed to keep her body fighting. Before Christmas Jessica was very ill, she spent Christmas day in hospital and friends reported that they had never seen someone fighting as hard as she was. Then, a miracle happened, in literally the 11th hour ( I won't go into details but it could not have been any closer) Jess got that call she had waited so long for, lungs had become availiable. she had nothing to lose and despite her fragile condition, she was blue lighted to Harefield and later that night recieved the chance at life she so deserved. No one could believe how things had worked out, it was a miracle pure and simple.I wish I could end this post here but unfortunately thats not the end of the story. Jess was recovering well from the operation and once again defying the doctors odds, being taken off the ventilator and able to take those first magical breaths. Devastatingly, just a few days later Jess's condition detriorated and she died peacefully with her family by her side. The transplant and CF communities were rocked by this terrible news, and no one could believe how the fairytale ending had gone so wrong. It seems so unfair that Jess didn't get to live her life after everything she had faced so bravely.Jess should never have had to wait so long for her transplant, and if more people had signed up to the register this story could have had a very different ending. The strain of so many years waiting had proved to much for Jess's body, she just couldnt recover from such a huge operation. If she had got that call sooner it would have been different.I wasn't a close friend of Jess's, but I obviously followed her story avidly as it was so close to my own. The transplant community is very close and we spoke occassionally but were always supportive of each other and rooting for good news. Despite not being that close I know that Jess was a remarkable young woman, always caring for other despite her own problems, incredibly strong, brave, and a firece campaigner for organ donation. She was loved by all and touched so many lives in her 20 years.I am heartbroken that she never got the chance she so desperately deserved. I know how hard the fight is and to manage to struggle to keep going for over 4 years is just an amazing feat and testament to what an amazing lady she was. I promise to keep campaigning for donors like she did and will try to battle on with as much grace as she did, living life because I am still here to do so.I have always know the call may not come in time for me, but I've never quite believed it fully until the last week. I get a gripping in the pit of my stomach when I realise that no matter what you do, how hard you fight, sometimes it just isn't enough. I am gutted for Jess and for her family who I think of lots.Jess you were one in a million, breathe easy now. You will never be forgotten x

What a lovely post in honour of Jess. Such a devastating end to her fight, but thanks to you and other people fighting to raise awareness, things could change for the future and Jess' part in that won't be forgotten. xxx

A very poignant and beautiful memorial to Jess, Victoria. None of us have the advantage of knowing how long we have left - the difference being that most of us are lucky enough not to be able to see any difference on a day to day basis.

Something we do all share however, is the ability, whether we're in good health or poorly - to learn the lessons we're supposed to, and to help make a difference. You're doing it, so for the rest of us, there really is no excuse.

Jess did what she came here to do - to educate others, and in that respect, her life's aim was fulfilled and she should be proud. So should you.

Carry on teaching, preaching and converting and in return, we all hope that you'll be able to contine doing so for many years to come.

Millions of people have been kind enough to donate money to the unfortunate inhabitants of Haiti. It will have taken a few minutes - the same length of time it takes to sign up to be a donor. Do it today and save even more lives.

Hiya Hun :)*Thanks for letting us know the good news...Keep those good results coming, both health wise and academically!!I had to laugh when I read your tweet this am...about a pouty, sulky child..sounds just like me on clinic mornings but I'm more than old enough to know better LOLI fret all the way there and never feel safe untill I'm on the first patient transport out,on my way home!!!I know how fortunate I am...at every clinic visit since my TX I have been given the all clear and Dr Carby always says he can't get over the changes in me... Even after my Bilobectomy a year ago. One of my best friends is celebrating her first TX anniversary today...at one point we thought we'd lost her.So today I'll celebrate with you for all your good news, with Fiona for her gift of life and for having Jess in our lives...Sleep softly sweet girl.I've got all my positive thoughts and blessings heading your way Hun...and everything crossed for you!! X X X X XLots of love and gentlest of hugzStevieanneStevieanneW@hotmail.com

29 yEAR OLD, ASPIRING MUSICAL THEATRE ACTRESS! WITH A BIG LOVE OF PHANTOM OF THE OPERA,HENCE THE NAME OF THIS BLOG(A SONG FROM THE SHOW). I HAVE THE GENETIC CONDITION CYSTIC FIBROSIS WHICH WAS AT THE STAGE WHERE I NEEDED A DOUBLE LUNG TRANSPLANT TO SAVE MY LIFE. I RECIEVED MY MAGICAL CALL IN OCTOBER 2011. THIS IS A PLACE FOR ME TO RECORD THE HIGHS AND LOWS OF LIFE ON THE TRANSPLANT LIST, AND NOW MY NEW LIFE BEYOND IT.
Contact me on tremletttor@gmail.com